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UAB Looks to Retain Participants in All of Us Research Program

BIRMINGHAM TIMES — Recruiting participants to a research program is one thing. Keeping those participants engaged over time is another. Investigators at the University of Alabama at Birmingham (UAB), which heads the Southern Network of the National Institutes of Health’s All of Us Research Program, will launch a new pilot study aimed at increasing participant retention rates in All of Us in the state of Alabama.

Published

5 years ago

October 30, 2019

Oakland Post

By Bob Shepard

Recruiting participants to a research program is one thing. Keeping those participants engaged over time is another. Investigators at the University of Alabama at Birmingham (UAB), which heads the Southern Network of the National Institutes of Health’s All of Us Research Program, will launch a new pilot study aimed at increasing participant retention rates in All of Us in the state of Alabama.

All of Us is a national program to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment and care for all of us. The overall aim nationally is to enroll 1 million or more volunteers who will provide information over time for use in a wide range of health research studies. The program will oversample communities that have been underrepresented in biomedical research to make the program’s dataset the largest, most diverse resource of its kind.

Launched in May 2018, All of Us has enrolled more than 270,000 participants nationwide. The Southern Network, consisting of Alabama, Mississippi and Louisiana, has enrolled more than 17,700.

UAB investigators, funded by an additional $7 million funding award from NIH, will conduct a pilot study to discover better ways to engage and retain those enrollees. UAB will share lessons learned from this pilot with other All of Us partners to support retention efforts nationwide, particularly with other rural and hard-to-reach communities.

“Retaining research participants over the course of a multiple-year study can be difficult, especially in a large, multifaceted program such as All of Us,” said Bruce R. Korf, M.D., Ph.D., UAB chief genomics officer and co-principal investigator for the All of Us Southern Network. “The goal of this pilot study will be to assess retention models even as we continue enrollment efforts throughout the three-state Southern Network.”

The pilot will employ a retention navigator model, using specially trained navigators to interact directly with participants. Navigators will be recruited locally in areas where access to UAB or the other study sites is a barrier to recruitment and retention.

“Individuals may be more likely to remain involved in the program if they can relate to trusted ‘retention navigators,’ who can help them to understand and interact with All of Us and overcome barriers such as lack of internet or email access or fear of research studies,” said Mona Fouad, M.D., director of the UAB Minority Health and Health Disparities Research Center.

Reaching Remote Areas

The program will be utilizing a mobile clinical unit to reach remote areas, eliminating the need for participants to travel to UAB or one of the other study sites. The investigators will also assess the efficacy of traditional and new digital retention strategies.

“Use of enhanced digital and traditional retention techniques can improve participant engagement and increase the likelihood of follow-up by creating stronger and more frequent connections to the program,” said Cora E. Lewis, M.D., chair of the Department of Epidemiology in the School of Public Health and co-PI of the Southern Network.

The pilot will identify and engage health care providers, community leaders and community organizations in the target areas to assist in the identification and recruitment of navigators, and then recruit retention navigators in those targeted areas. Investigators hope to increase study retention by assisting participants in completing follow-up surveys online through the All of Us participant portal.

“Recruitment and retention of participants in clinical research is the key to finding the answers that can be transformative for the overall health of our state and region,” said Selwyn Vickers, M.D., senior vice president and dean of the UAB School of Medicine. “I applaud the leadership and staff of the Southern Network for their outstanding efforts thus far. I am confident that they will discover and fine-tune new strategies for keeping those who selflessly give of themselves to participate in All of Us active and engaged over the course of the research project.”

Alabamians age 19 or older, regardless of health status, are eligible to enroll in the program by visiting JoinAllofUs.org/UAB.

The All of Us Southern Network includes the University of Alabama at Birmingham, Cooper Green Mercy Health Services, Huntsville Hospital, Louisiana State University Health Sciences Center, Tulane University, Tuskegee University, UAB School of Medicine’s Montgomery Internal Medicine and Selma Family Medicine programs, UAB School of Medicine’s Huntsville Regional Medical Campus, University of Mississippi Medical Center, University of South Alabama Health System, and University Medical Center in Tuscaloosa.

This article originally appeared in The Birmingham Times.

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OP-ED: The Illusion of Allyship. White Women, Your Yard Signs Mean Nothing to Me

NNPA NEWSWIRE – “The blue bracelets are something White women are wearing so others can see that they didn’t vote for Trump,” says Liberal Lisa from Oklahoma on X. Chile, bye. These bracelets are hollow symbols, empty gestures that mean nothing to me. An accessory to claim distance from Trump’s legacy is superficial comfort, while the choice to not stand with us in the voting booth is far more profound.

Published

2 weeks ago

November 9, 2024

Oakland Post

Political yard signs can symbolize intentions and allegiance. But this year, they’ve also symbolized betrayal. During this general election, Black women were led to believe that more White women would stand with us. Exit polls, however, told a different story. Despite overwhelming displays of support, more White women still chose to vote for the convicted felon, reality TV star, and rapist. White women answered the call but left us hanging at the polls.

A Familiar Disappointment

I live in DeKalb County, Georgia, and the abundance of Harris-Walz yard signs could’ve fooled me. But I’ve seen this before, back when Stacey Abrams ran for governor. White women showed up, put up signs, attended rallies, knocked on doors, and phone-banked. Yet, when it came time to vote, they let us down—not once but twice. I’ve been here for over 15 years, and if there’s one thing I know, it’s that political signs are symbols without weight.

In every election, I’ve talked with White women. Most aren’t the primary earners in their families and vote along party lines, aligning with the preferences of their fathers and husbands. These conversations reveal a reluctance to break from tradition, even when their votes affect women and certainly when their votes impact the lives of people who look like me.

The Illusion of Solidarity—Symbols Are Not Enough

On social media, I’m seeing White women posting pictures of blue bracelets to “prove” they didn’t vote for Trump. “The blue bracelets are something White women are wearing so others can see that they didn’t vote for Trump,” says Liberal Lisa from Oklahoma on X. Chile, bye. These bracelets are hollow symbols, empty gestures that mean nothing to me. An accessory to claim distance from Trump’s legacy is superficial comfort, while the choice to not stand with us in the voting booth is far more profound.

I’ve seen Black Lives Matter signs and black squares posted on Instagram to “prove” support for Black people, but we now know that was a lie, too. Will those same people who claimed Black lives mattered now take down their Harris-Walz signs and show their true selves?

Navigating these truths is a daily struggle for me—professionally and socially. White women often misuse their privilege, supporting us only when it’s convenient. Seeing overqualified Black women sabotaged or abandoned by White women at critical moments is a constant emotional challenge. It’s exhausting to live with this reality, especially when solidarity seems like something they pick up and discard at will.

One clever campaign ad from Harris-Walz that spoke directly to White women. “Your Vote, Your Choice” emphasized that their vote was private—independent of their household situation. Another was from Olivia Howell Dreizen, the “Vote Without Fear” campaign, which empowered women to consider the greater impact of their choices. But it seems many still couldn’t choose the roadmap to freedom—even when it was handed to them.

A Call for Action Beyond Words

White women, I want to believe you care, but actions speak louder than yard signs, bracelets, or Instagram posts. Show up in our communities, advocate in your workplaces, and stand up to dismantle the structures that uphold white supremacy. Only through real action will we know where you stand.

If you choose not to act, we see you—and we know exactly where you stand. Good luck these next four years.

Disclaimer: The views and opinions expressed in this article do not necessarily reflect the official policy or position of BlackPressUSA.com or the National Newspaper Publishers Association.

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Supernova Parenting Conference Empowers Over 100 Parents with Resources for Neurodivergence and Mental Health

The inaugural Supernova Parenting Conference was co-hosted by Natasha Nelson, known as Supernova Momma, and Yolanda Walker, founder of Parenting Decolonized. It brought together over 100 parents, caregivers, and educators dedicated to fostering understanding and support for neurodivergent children and mental health challenges. The conference provided invaluable resources, expert insights, and a collaborative space for […]

Published

2 weeks ago

November 7, 2024

BlackPressUSA.com

The event featured a variety of workshops, panel discussions, and keynote speeches from leading experts in neurodiversity and mental health. Attendees left with practical tools and strategies to enhance their parenting journeys, emphasizing the importance of understanding and supporting the unique needs of neurodivergent children.

“While the conference was a tremendous success, we believe that our work doesn’t end here,” said Natasha Nelson. “It’s crucial to continue providing ongoing support and resources for parents as they navigate this important journey. We want to ensure families can access the tools they need long after the conference.”

To extend the momentum generated at the conference, Natasha and Yolanda are excited to announce the launch of the Supernova Parenting Community. This membership-based initiative aims to offer a safe and supportive environment for parents and caregivers to continue their growth as conscious parents.

Membership is available for as little as $5 a month via Patreon, making it accessible for all families seeking support.

“We know that parenting can be a challenging journey, especially when navigating neurodivergence and mental health issues,” Yolanda Walker added. “Our goal is to build a community where parents feel seen, heard, and supported. We hope you’ll join us in this vital work.”

For more information about the Supernova Parenting Community and to sign up for membership, please visit supernovaparenting.org